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Sunday, March 30, 2014

About Our Baby's Head

When Henry was born, it was obvious that his head was not completely round. Of course, newborns often have strangely-shaped heads after making their way down the birth canal. And plenty of babies develop flat head syndrome (plagiocephaly) that can be fixed by wearing a helmet. But Henry’s condition is a little more serious than that.

A CT scan at 9 days old showed that one of the bones in Henry’s head had completely come together with another bone in his head. (These bones are called “sutures”.) This means that one of his soft spots had closed too early, while he was still in the womb. His head looks somewhat normal from the front, but you can definitely tell that the back of his head is pointy. The side view and top view show that his head is long and boat-shaped.

Henry's fluffy hair generally hides the odd shape, but you can really see it in the bath pictures.

The good news is that Henry’s scan showed completely normal brain growth and his doctors do not believe that he has any increased intracranial pressure. However, as his brain grows more, his head NEEDS to be able to accommodate it. If his head isn’t able to grow in a normal, round shape, it could cause future intracranial pressure and development issues. So that is why our sweet little guy will be spending his 3 month birthday in the hospital having surgery on his skull.

While I am absolutely terrified to hand over our perfect baby to an operating room full of surgeons, I am trying my best to stay positive and focus on these things:

1. Thankfully, the neurosurgeon does not feel that Henry needs the most invasive open-head surgery (cranial vault reconstruction). Instead, he will be performing a smaller-scale surgery called the pi procedure. This surgery should take less than an hour and will require a 2 or 3 night hospital stay.

2. Although the surgery will leave Henry with a scar from ear-to-ear, the scar will eventually be covered up by his beautiful hair. (I was thrilled to find out that they will only be shaving a strip of his hair for the procedure, rather than his entire head!)

3. Out of all of the types of craniosynostosis that exist (yes, that long, scary word is the official name of it) Henry has the mildest form. He has none of the syndromes that can sometimes occur with it. He only has one suture that closed (the sagittal one) instead of multiple sutures. The type that Henry has, non-syndromic craniosynostosis, is considered to be “an isolated condition in an otherwise normal child”.

4. This condition is fixable and should not affect him severely for the rest of his life. Approximately 1 in 2,000 babies have this, and doctors have been successfully treating it and fixing it for decades. There are so many more serious illnesses and heart-breaking conditions that other children and their families have to suffer through. We are truly blessed, in that sense, that God gave us two very healthy children, and we will never take that for granted.

------------------------------------------------------------------------------------------------------------------------------When we first found out about this, one of my first questions was, “What caused it?” It is hypothesized that non-syndromic craniosynostosis is caused by fetal head constraint, meaning that his head got stuck in a weird position in the uterus and there was not enough room for it to grow in the correct shape. Some types of craniosynostosis are linked to genetics, but those are generally the more severe cases that involve syndromes.

Please send all of your most positive thoughts and prayers for our little one next week. Pray that the surgery goes smoothly, that he does not feel too much pain, that he recovers quickly and easily, and that he does not have to deal with any effects of this in the future (besides the scar, of course). At least he is young enough to, hopefully, never even remember the surgery itself. Also, please pray for Barry, Ryan, and myself, as we try to gather the inner strength to get through this week and next week. I know that the surgery is for the best, but I am scared that I won't be able to go through with it. Please pray that I can put my own feelings aside for the best interest of our child.

The pointy part of H's head is noticeable here.

I have honestly had a difficult time talking about this, up until now. Talking and writing about it somehow makes it more real, and it was simply easier not to think about. It is crazy that we are now just a few days out. In my mind, our happy, easy-going baby is one hundred percent perfect, and the fact that he needs surgery is just so hard for me to wrap my head around. I mean, that little guy holds my whole heart. The thought of him feeling any kind of pain absolutely kills me. I hope that we are making the right decision and that we will be able to look back and see this as just another obstacle.I guess what they say is true about life being a series of peaks and valleys. Thank you all for your support.-----------------------------------------------------------------------------------------------------------------------------

7 comments:

Dana, my prayers be with your family thru this difficult period. God will bless this loving family, and Henry will recover in no time. He's such a darling and it always brings a smile to my face when i read upon new entries on your blog.

Dana, I just found your blog tonight, while I was looking for some learning activities for toddlers. I am rejoicing with you in your healing from breast cancer! I pray that the God who is the same yesterday, today, and forever will touch your family and bring your son safely and strong through this surgery. Praying Jesus' peace, which surpasses understanding, to be with you! Blessings, Jane

Dana, I also was originally on your blog looking for learning activities for my son. I was intrigued to read a lot of your blogs and you are one strong woman. May God bless you and your adorable family. Henry is a doll and I do hope he recovers quickly.

@Joanne Tan @Jane Frisch @Anonymous- Thank you all, from the bottom of my heart. Your prayers and support have made all the difference! Henry did great during surgery and he is recovering well too. =) =) =)

Dana I came on your blog for Montessori ideas for my 19 month old and newborn. I now think I was meant to see your blog to pray for your beautiful family. God bless you, you are an amazing Mommy. I went and got a rug for Claire and started work bc of your blog. Thank you.

I am amazed at your strength. I will be praying for you and your family. I came on your blog for montessori ideas. I now see there is more, beauty of every day with your child. You helped me a lot. i got a rug for my 19 month old and set her work in trays. she loves her work. thank you for .motivating me!!!!God Bless

@Alana Stanton- That is great that your daughter has been enjoying the Montessori work that you prepared for her. It really is a lot of fun and I think that it makes a lot of sense for children to learn this way! Thank you so much for your prayers. Little Henry is doing wonderful now!